Going back to work after the NICU

I recently came across a post on social media, where a mother shared her plan about returning to work after coming home from the NICU and asked for advice on what other NICU parents did. The thread that followed completely blew my mind! I couldn’t believe how many parents responded and how similar their stories were to ours. Having a baby in the NICU is life changing, and more often, bringing a baby home from the NICU is also life changing. Some parents bring home babies from the NICU who still require a lot of care. They have to make some serious decisions about who is going to care for the baby. There are so many things that a NICU parent has to worry about when it comes to your baby’s health and bringing them home. You are trying to do everything to keep from your baby going back into the hospital.

Avoiding Illness

Our youngest was born at 27 weeks, weighed 2 lbs. 5 ounces, and was in the NICU for 67 days. When we were able to finally bring her home, we were determined to do everything in our power to keep her from having to return to the hospital. As we came home we had to deal with several factors that required us to be vigilant in what we exposed her to. Since our daughter was a preemie and coming out of the NICU her immune system was not that strong. Her lungs were also underdeveloped and very sensitive. After we came home RSV season started. We did not want to risk her catching it, so we basically incubated in our house for the first year of our daughter’s life. School had just started for our then 4^th grader. We had to be very careful of all the germs that she brought home from elementary school every day.

So Many Appointments

Another aspect we had to deal with were all the doctor’s visits and therapies. It seemed like we were seeing a doctor every week, either our primary, a specialist, therapist, or someone who was evaluating our daughter’s progress as a preemie. She did well at her first initial evaluations, partly due to her being evaluated for her adjusted age. These doctor’s visits are so crucial for the proper development and growth of NICU babies. As she got older, she fell behind on a couple of things. She was diagnosed with torticollis, thumb-in-fist posture, and had low muscle tone, which made her neck and upper body muscles weak. These diagnosis led to weekly therapy appointments, which on top of our  regularly scheduled doctor appointments, filled our weekly schedule quickly. We had occupational therapy for her hands that we went to every other week. We also had an amazing therapist that would come to our house twice a week for physical therapy. She helped our daughter learn to crawl, stand, and eventually start walking. We did this for almost over 8 months.

Going Back To Work

All of these appointments put a strain on our day-to-day schedule. I basically took almost a year off from working. We could not put our daughter in a daycare. She was too young and fragile. Even if we had, it did not seem realistic to have her therapist try to perform physical therapy at a daycare. When you have a baby in the NICU it is already very difficult to manage time off from work. Mothers need time off to heal, but you also need time off to bond and care for your baby when they do finally come home. For us, we were fortunate that my wife’s employer was sympathetic to our circumstance. They allowed her to adjust her time off and gave her a little more time once our baby finally came home. She took 8 weeks off after the baby was born, and another week when the baby came home. Even then, those few weeks were just a drop in the bucket for the demand of care and appointments that were needed that first year. Luckily I help run the family business, and I basically took a year hiatus. I spent that year at home taking care of our baby, taking her to doctor’s visits or evaluations, and physical therapy at our home.

We Were Lucky

We were fortunate, not everyone has this luxury. We were able to still manage with only one of us working. Since our daughter was born at 27 weeks and weighed 2 lbs. 5 ounces, she was labeled disabled, and we were offered some assistance. We were also fortunate in the fact that doctor’s visits and therapies were all we had to deal with. Many families bring babies home who require full-time care and have added medical devices that they come home with. Some families bring home babies who require surgeries and added hospital stays. It’s hard enough going through the NICU roller coaster, but for some, coming home and trying to manage going back to work, seems downright impossible!

I think what effected me the most when I saw the thread to that post, was that there were so many responses, and almost all of them were situations like ours. There were some people who had just gotten promotions, but after their NICU experience and finally bringing their babies home, they left their positions. Many people started working from home. Others left their job and went into completely different fields that allowed for more flexible schedules. There were also families that had to make decisions where one parent had to stay home. I know there are a lot of NICU dads out there, like myself, that were the winning candidate. It was a real eye opener for me to see how many people were in our same situation. It almost seems this is par for the course. Maybe it is something that needs to start getting addressed on a larger scale? That is for another conversation, one that could maybe include how when parents bring home a baby from the NICU they might get more assistance if one of them were to leave their job. But let’s not get started on that…

If you experienced a similar situation, please share your story in the comments below.